Hello., I’m Jackie. I’m 53 years old and I’ve been plagued with " idiopathic" illness since my early 20’s. At that time I had cardiac arrhythmias which were difficult to Cath on a holster monitor but after my first cardiac arrest at 23, I finally convinced doctors that it was real and not anxiety. Fast forward 20 years later and I have congestive heart failure due to endothelial malfunction. I have ventricular tachycardia and I had rapid and constant atrial fibrillation. I now have an implanted defibrillator and am 100 percent paced.
Several years ago I started having more extreme fatigue than usual and difficulty walking in a straight line. I had episodes of double vision. Two years ago I started falling and losing my balance easily. Difficulty climbing stairs. I climb up on my hands and knees. These new symptoms were masked by my other illness for which we never found a cause. I went to a neurologist who said I had symptoms of cerebellar ataxia but because he couldn’t do an MRI (Bevause of the defibrillator) he couldn’t and woyldnt make a diagnosis. Neurologist number two told me I has Cerebellar Ataxia which is progressive and there is no treatment, no cure. No need for a follow up. His report however is vague because he can’t make definitive diagnosis without MRI. goodbye. Meanwhile, I’m having increasing difficulty walking. It’s like walking in the sand in flip flops. Exhausting and the sand shifting under your feet. Neurologist number three says I have cerebellar ataxia and he suspects it is a genetic type. Genetic testing would cost 20,000 dollars and my insurance doesn’t cover it. No matter because there is no treatment. Goodbye. Another year later and I’m dragging my feet especially when tired. My right foot drops frequently and trips me up. At home I find it’s easier to slide.mu bate feet around on the floor to get around. We put another railing on the stairs and install nightlights so I can get to the bathroom at night. Darkness paralysis me because I can’t move… I don’t know.where my feet are where my body is in the dark. I lean against the shower wall to wash my hair. I haven’t left the house more than four times in the last month. If my husband is with me I hold his arm. Driving, I find myself leaning sideways with my elbow.propped on the console to hold myself up. My primary care physician sends me to a PT for a gait and balance evaluation for assistive device. He watches me walk. He says my balance is poor and gives me a cane with very little instruction how to use it. I’m embarrassed because I can’t coordinate the cane with my stride. He admits he’s “not up on neurology stuff”. I have a hard enough time getting my legs to do what I want them to do and now I have to figure our what to do with the cane? Coordinate three legs now? This is all I’ve got. I can’t seem to get someone to help me cope with this. When I’m out all I can think is that I want to get home and sit on my couch… Is this the best they have to offer someone like me? I don’t know.where to turn. I’ve tried three neurologists and a PT. I give up.[quote=“ModSupport, post:1, topic:5054, full:true”]
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Welcome Jackie! I moved your post to it own topic, I think this way it will get seen.
Cerebellar Ataxia can be idiopathic or hereditary, there are multiple types and within that type it can give you whatever symptoms it wants and progresses at whatever rate it wants.
Exercise (riding stationary bike, swimming, walking) seems to help. PT does seem to help you walk better but make sure they take care of neurological conditions not orthopedic. There is a difference. A physical therapist changed my life. They taught me to walk better so I don’t trip which makes you more vulnerable to falling, taught me how to go up/down stairs, walk on uneven ground, go up/down ramps. If you need canes or anything else they will work with you with that. The right therapists are out to improve your life. It seems like a long time but I went for 6 months, 2 times a week. That was a few years ago. I haven’t had to go back but I use what they taught me every time something comes up.
You are in the US so if you haven’t applied for disability, do it. Just remember you can’t collect any income while their decision is pending. Once you have been approved you can work some and make up to about $1000/month. Also after 22 months you are eligible for Medicare and that has Silversneakers which allows you to have memberships to places to work out (multiple places if you want).
Find a doctor that it willing to work with you. I just go to my primary care doctor and when he can’t do something he refers me out to someone who can.
This website is a great place to just vent or to get advice on anything.
You’ll probably have to do most of the research yourself. Unless you go to a doctor that specializes in ataxia very few doctors are going to be “up to speed”. My primary doctor can check my balance just as well as a neurologist and he’s cheaper. The only time I go to a neurologist is when I have a change in my symptoms and my primary doctor can’t do anything.
Hi Jackie & welcome. I’ve deepened my faith in God since becoming disabled 2 yrs ago. I will pray for you. Don’t give up, please.
Welcome, Jackie. You sound incredibly frustrated with all your problems. I also will be thinking of you and praying for you. I have been disabled now for 7years. Although my problem is not degenerative, I am very frequently frustrated by all my problems, so I can feel for you.
Welcome Jackie, please don’t feel embarrassed about your situation. Your not alone, on this site you will find many with a similar plight. And we all learn from each other. I’m only 44, so I get all kinds of stares. Some in disbelief that there could be something wrong with me at my age. I’ve even been pulled over by the police and given a roadside breathalyzer, (they suspected I was impaired) talk about embarrassing, and what a scene!
Keep your chin up and keep going!
Hi Jackie, welcome😊xB
jackie,
try magnet therapy. its helping my walking.its bad enough that we get aggrevated because of our symptoms but they dont do any research either. i know cause i try to do resarch on it.
Thanks Bobby, but with an implanted defibrillator, magnets are not good!
Beryl,
Can you please tell me more about the magnets? Thanks.
Bobby,
I am sorry. I meant to ask you the question about magnets.
I’m glad it wasn’t me, I’ve never heard of it😉xB
Hi I’m Tracy I was diagnosed with ataxia 2 about ten years ago I’ve only just relised about symptoms now and been told I’ve got stagnus ataxia now I’m not sure think it’s both now
Hi Tracy, welcome 
If you haven’t already, log onto www.ataxia.org for helpful information about ataxia. You probably already know about www.ataxia.org.uk where you’ll also be able to find information 
And, in the UK, there is an online Ataxia Support Group, healthunlocked ataxiauk. xB
Thanks Beyral I did receive my information of ataxia UK to go on these sites which you asked me to get the information pack thankyou very much
Hi Jackie,
I was just diagnosed with EA2. I had similar symptoms but not as severe. Doc started me on a beta blocker and that has helped my balance considerably. With your heart issue, not sure that would be an option.
Please do t give up hope. There is help out there. You have to find the right doctor. Talk to people, go out of town. That’s what I finally did and it’s made a big difference although I think there is some function that has been lost permanently. Good luck.
Hi Beryl, so you have migraine with yours?
No, I don’t have migraines. Some types of EA are linked to headaches, and it’s possible some people may actually experience migraine. See www.ataxia.org for a FACT SHEET relating to EA. Search for Episodic Ataxia, click on FACT SHEETS and scroll down the list. There’s also a FACT SHEET ‘Medications for Ataxia Symptoms’ xB
Beryl-you seem so informative-my doctor isn’t telling me what kind of CA I have-but I have serious headaches-are headaches linked to CA in general or just EA?
Linda, headaches aren’t uncommon with Cerebellar Ataxia, and some people say they feel like migraines. Often, people say they cope with regular off the shelf medication. But, it’s always best to check with a doctor or pharmacist when you already take prescribed medication, in case of any interaction. Some Ataxias are more prone to migraine type headache. Try and make an appointment with your Neurologist if you need peace of mind. It’s always possible that headaches may be a side effect of prescribed medication, not everyone reacts in the same way 
xB